BLINK ONCE | EG Shields
The three days since I stepped off an early morning flight from New York run together with indeterminable beginnings and ends, making it feel like I've been at the hospital for months. The orange-gold light of a Tennessee autumn fights to shine through the window blinds. Outside the neighborhood prepares for Halloween, stringing gauzy spiderwebs through trees and staking figurines of black cats and tombstones in front yards. My mom is in the ICU, and I’m afraid she is dying.
It can be hard to get a sense of how my mom is actually doing. Her answer, consistently, since she was diagnosed with Amyotrophic lateral sclerosis a few years ago is always, I’m doing great! I’m waiting for a cure.
The doctors don’t understand what I mean when I tell them my mom and I talked about her wishes.
“You mean before the ALS? Before her disease progressed?” They ask me.
“No!” I insist. “We talked about it just last month.”
Except my mom doesn’t actually talk. She types out the words she wants to say, her communication device reading them aloud in a mechanical, generic woman’s voice. “Samantha, American Female” is now the voice that has replaced hers in my memory in the years since she lost the ability to speak. But too often, there’s some kind of glitch and her communication device stops working. This morning in the ICU was one of the mornings it had chosen to glitch.
We call it the Device. A tablet screen, suspended on what looks like a wheeled, one-armed coat tree, has to be charged constantly and then calibrated to my mom’s particular gaze. We adjust and readjust it until it rests at a specific distance from her forehead. One of my mom’s caregivers cut a patterned ribbon from her sewing box and taped it to the top of the Device as a guide to make positioning easier, but it still has to be tilted and wriggled and tightened into place just the right way, otherwise she can’t communicate at all. My mom uses her eyes to painstakingly type out whatever she wants to say on a keyboard on the screen. Cameras in the Device track her eye movements, and she stares at each letter until the machine senses her intentional choice. Once she formulates what she wants to say, the Device reads it out for her. When it’s working, that is.
“Before we can move forward, we need to confirm if she wants to proceed with an emergency tracheostomy,” the doctor tells me.
I thought the procedure was a last resort because of the amount of care it requires, so when my mom started casually mentioning it in our text conversations I didn’t know what had changed. Surprised, I tried to talk to her about it and plan for what that decision would mean for her, for her care, for her desire to continue living at home.
“Let me see if I can get her Device to work,” I tell the doctors. “She can tell you she wants to go ahead with the procedure.” I stand in the ICU room next to my mom. She isn’t able to breathe on her own; an intubation tube snakes down her throat. The straps and wires holding the equipment in place cover her face and no matter how much I readjust the screen on the Device, I can’t get it to recognize her. No eyes detected, it reads.
“You said she uses this machine daily?” the doctor asks.
“Yes!” I insist. “She’s normally very chatty.”
The doctor, the ICU nurses, are doubtful. They can’t see how she could possibly communicate, especially the way she looks under all the tubes and wires stretching across the hospital bed. A part of me understands this. She is on a ventilator, 75mg of fentanyl dripping into her veins.
The ventilator alarm cuts through the air, startling me, and a nurse rushes in.
“Honey, try not to bite down on the tube,” she says, trying to soothe. “I know it’s hard.”
Everyone at the hospital raises their voices when they address my mom, like not being able to speak means that she also can’t hear or understand. She can, though. I can tell because her eyes are alive. They are darting around the room. They are afraid.
“Sweetie, do you need anything?” The nurse asks slowly and loudly. “Blink once for yes.”
My mom blinks. She rolls her eyes up, gesturing above and then coming back to rest on the nurse's eyes.
“Is it the light?” the nurse guesses.
My mom shakes her head nearly imperceptibly. No.
It isn’t pain. She’s not rolling her eyes at something said. It isn’t her pillow. Finally, through a series of yes and no questions, blinks and headshakes, we realize my mom wants the bed sat up straighter. I squeeze her hand. Her palms sweat. She hasn’t been able to speak for years now, but I never think about how much she actually says. She argues with me. She curses. She tells the same stories she’s been telling for years and I wait while she does the eyeball equivalent of finger-peck typing on her Device screen. This is our normal now, and it is frightening to me to realize just how vulnerable she is to everyone outside of us.
The last time I stayed at my mom’s house one of her in-home health aides tested positive for Covid and the agency wasn’t sending caregivers to help us for a week, a forced quarantine. I called again and again.
“We’re all negative,” I told them. “Please, can’t you send one of the other caregivers? We really need someone.”
“I’m sorry, you’re going to have to use your backup plan,” they told me. But the only backup plan was me.
My mom was still speaking at that point, although her voice had changed. Her new voice was hoarse and croaking, like she needed to clear her throat. It was like she couldn’t breathe in enough air to make words come out at full force. I can’t remember how her voice sounded before. It’s like my memories of her start with this voice, everything before rewritten to a new timbre.
That winter, eight months after her diagnosis, she was already having trouble eating. I cut everything into small bites or pureed it in a smoothie maker so she could eat it without it getting caught in her throat and choking her. Solid foods were dangerous, but she also had trouble swallowing liquids. Her doctor had sent her home with packets of thickening powder that you stirred into drinks or soupy foods to stiffen them into a runny Jell-O. Every morning she sipped her thickened coffee through a straw before she got out of bed. She was looking for a sense of normalcy, like no matter how bad things got she still had a routine. I tried to be creative. I pureed her favorite breakfast, Froot Loops and milk, into a dark purple slush for her to eat in the mornings. I blended soups into thick gelatinous broths. I even put mashed potatoes and pot roast into the blender so she could have a proper dinner. Her arms were losing strength and she had trouble grasping silverware to bring it to her mouth, even the ones with the big rubber handles the occupational therapist gave us. During each meal I sat next to her, spoon feeding her bite by bite in between my own.
On New Year’s Eve my mom asked me to dust off a bottle of the good wine. I poured us each a glass, hers in a lidded cup for juice with a straw poking out of the top. I stirred in the thickening powder until the wine congealed and we toasted, giddy that we had found a “normal” way to celebrate. We were tipsy that night when I crawled into the hospital bed we had installed in her room alongside her to watch the ball drop. I opened a bag of Cheeto puffs and popped them into my mom’s mouth one at a time until the dust irritated her throat, causing her to cough and splutter. When midnight came and the ball dropped I laid my head on her shoulder. Happy new year! We said. I wondered if that would be the last time.
My mom’s lungs are weak.
“She won’t be able to breathe on her own again,” the ER doctors tell me, making it clear that the only chance she has to survive is an emergency tracheotomy. They can’t keep her intubated on the ventilator for much longer. The doctors ask if she has Advanced Directives. My mom has not been the best at planning. She didn’t even name a Power of Attorney until last month. All along she has firmly held onto the belief that she will get better. Days before she was rushed to the ICU she was living at home with my grandmother and two cats, like she had all along. I think back to all the times she answered my questions with the nonanswer I’m waiting for a cure, even after her ALS doctor told us that specialized care is the best chance of increasing longevity with this disease. She kept waiting and I kept wondering when it might finally be too late.
“It’s not sustainable,” the doctors say. We need the bed open, they don’t say. There are eight rooms in the ward, and there are more than eight emergencies waiting.
“This is what she wanted,” I reply, shakily. “She said she wants all life-saving measures.”
“So she consents to this procedure?” They ask.
“Yes,” I repeat. “This is what she wants.”
Is this what she wants? I think she does. I had resigned myself to her decision, but now in the ICU I’m not so sure. She was so set on it, talking about it as an inevitability. Talking about it like the trach tube would get her to that cure. Just last month I had tried to reason with her, to talk her out of getting the procedure, saying a tracheostomy was too intense, the upkeep too much work, saying she needed to really think about it. I told her I’d been reading up on the procedure and its aftermath. Told her she would have to have her lungs suctioned multiple times a day. Did she decide that was worth it?
Gathered around her bed in the ICU the ER doctors ask, “Do you consent to this procedure?”
I haven’t succeeded in getting the Device to work. My mother blinks once for yes.
I sit with my mom in the ICU all day, waiting for a spot to open up in surgery. 7 a.m., they tell us. Then 9. Then 4 in the afternoon.
I work remotely from my mom’s bedside. I started a new job less than a month ago and I am afraid to dip into my benefits so soon. I never know when I might need days. I never know when something might go wrong.
4 p.m. comes and goes. Then 7 p.m. They keep telling us they will get her into surgery as soon as possible. We keep waiting.
Visiting hours end, but I am afraid to leave. I am afraid my mom will be scared. I’m afraid that she is afraid to be left alone. I want to be there when the surgeons come to get her in case she needs something and they don’t take the time to do twenty-questions with her eye blinks. I want to be there when she gets back from surgery so she knows it all went ok. I want to be there in case the anesthesia messes up or her heart stops or her lungs collapse. I want to be there.
I sit by her bed and hold her hand, warm and soft in mine.
“Do you want me to read to you?” I ask. This is something we do regularly, a way to connect without conversation.
My mom blinks once.
Night has fallen outside the window, dark and starless. I realize I haven’t seen the sky today. Earlier, a family friend dropped off a bag of what she told us were lighthearted books, in case we needed distraction. She took my hand before she left, gave me a long hug. I’ll always remember your mom’s voice, she told me. So beautiful. My mom used to sing in the choir, the lead soprano always getting the solo parts. I tried to recall, to hear the soaring notes of her hymns, her rich alto as we sang bluegrass together in the car, the slight vibrato as she accompanied herself on the guitar to Peter Gabriel and CSNY songs. I tried so hard, but I couldn't hear it. I can’t remember what she sounded like.
Early on, when her symptoms were just beginning to show and we still drove back and forth to the neurology clinic five hours away for testing, she read on the internet that many patients do something called “Voice Banking.” They record themselves saying certain phrases that they can play in their own voice later when they experience difficulty communicating. My mom kept a folder of voice memos on her phone saying things like, I love you! and I want to read a book with you! A record of some things she said daily, and other things that she thought she might want to say in the future. But her voice was gone before she could make a full library, first turning scratchy, then croaking before disappearing entirely.
I read aloud from Harriet the Spy. I turn to the next chapter, doing all the voices until my mom’s eyes close. I shut the book and sit it in my lap, rubbing the back of my mom’s hand with my thumb. She has a frown line between her eyes, all that I can see of her face over the ventilator tubes. I reach forward and brush the soft grey hairs away from her forehead. The fluorescent lights hum above us. Muffled beeps and moans come from the rooms around us, but for once today the ICU ward is mostly silent. I wait for the doctors to come pick my mom up for the surgery. I text Nana to let her know they still haven’t arrived. For a moment, I let myself feel the smallest whisper of hope. My mom knew what she was doing, didn’t she? Maybe I have been too cynical. Is it really so impossible that a cure could come in her lifetime? It’s a terminal disease, I had repeated, over and over. To which she always responded, I’m waiting for a cure.
Finally, at 9:00 PM, the surgeons arrive. My mom’s eyes open, searching for mine. I stand, squeezing her hand that I haven’t let go of and look into her eyes.
“Are you ok, mama?” I ask. “Are you ready?”
She blinks once, for yes.
EG Shields is an Appalachian-born writer and graphic memoirist. Based in Brooklyn, she can usually be found daydreaming about the mountains and looking for green spaces. A graduate of the New School's MFA program, her work has been featured in the Reader's Write section of The Sun magazine, The Rumpus, Arkana Literary Magazine, and Barely South Review.